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rippermd41.bsky.social
The Real McCoy
@rippermd41.bsky.social
2.3K followers 910 following 1.8K posts
My life runs by the Murphy’s Law of illness: If something can go wrong, it will go wrong. Latest one is #MECFS but the laundry list is long. Live in New England
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rippermd41.bsky.social
My husband opened my windows then I zoned out for a bit.

Record low of 41.7 😬

To be fair I was aiming for 48-50F 🙃

It’s amazing how much better I sleep in a super cold room. I also wake up feeling less poisoned and with a clearer head.

#MECFS
Screenshot of Aranet 4 CO2 monitors CO2 562 ppm (written in green) 41.7 F 30% humidity 755 mmHg
December 15, 2025 at 5:44 AM
rippermd41.bsky.social
So sad to see the news about Megan over on Twitter.

We both got sick from mono in 2019.

Yet again thinking about how much the medical system failed her.

(if like me you remember profile pics better than names, a screenshot of her account.)
Memorial post from Facebook from Philip Barber • Rest in Peace, Megan, my dear friend [hug emoji, blue heart emoji] Thank you for sharing your journey so transparently and unflinchingly. And most of all, thank you for your kindness. #MillionsMissing #mecfs #MyalgicEncephalomyelitis #pWME Color photograph of a young white woman with blue hair and a nose piercing smiling at the camera. Behind the photograph are illustrations of blue roses and a blue butterfly. Over the photograph text reads: Megan Pendleton Rest in Peace 2025 Screenshot of profile of @mecfscomrade on Twitter Banner image is a painting of a woman lying in a 4 post bed. The woman is lying on her side in a respirator covered in vines. Behind her are storm clouds. Profile pic is a painting of a woman with black hair smoking a cigarette. The background is made of falling pills. Name: [ghost emoji] ghost of submersibles ablaze [blue wave emoji] @MECFScomrade Follows you she/her | life on pause due to severe ME & co (since 2019) [wheelchair emoji] land back! Joined December 2022 > 1,504 Following 2,496 Followers
December 12, 2025 at 9:49 PM
rippermd41.bsky.social
Source 12 is about MS not #MECFS and it’s CBT🤦🏻‍♀️

They meant syndromes with chronic fatigue. Confusing AF choice as ME is also known as chronic fatigue syndrome.

Plus MS patients do NOT have #PEM as evidenced by CPET.

#LongCovid

Link to source 12: www.sciencedirect.com:5037/science/arti...

5/
Screenshot of citations from source at top reads: 12. • Thomas S, Thomas PW, Nock A, et al. Development and preliminary evaluation of a cognitive behavioural approach to fatigue management in people with multiple sclerosis. Patient Educ Couns 2010;78:240-9. doi:10.1016/j. рec.2009.07.001 CrossRef PubMed Web of Science Google Scholar
December 10, 2025 at 4:37 AM
rippermd41.bsky.social
Then it all falls apart here.

“The intervention was informed by existing rehabilitation frameworks which have shown promise in chronic fatigue syndromes.”

I wonder what their source is…
That’s a typo with the s at the end of syndrome, right?

🤔

4/
Screenshot from source linked at top reads: To address these critical gaps, we have developed COVIDEX, a novel, remotely delivered, multimodal rehabilitation programme specifically designed for Long COVID fatigue. COVIDEx integrates patient-centred strategies, including energy conservation techniques, cognitive behavioural approaches and structured pacing principles, to mitigate PEM risks while improving functional capacity. '' The intervention was informed by existing rehabilitation frameworks, which have shown promise in managing chronic fatigue syndromes.12 Our hypothesis is that a structured, individualised rehabilitation approach will improve fatigue and quality of life in Long COVID patients while minimising the risk of symptom exacerbation such as PEM.
December 10, 2025 at 4:37 AM
rippermd41.bsky.social
The classic hurdle in #MECFS: they conflate #PEM with fatigue.

I was honestly optimistic at first because they used this definition.

They recognized PEM as a “pathological condition,” and mention #MECFS

3/
Screenshot from source reads: Among the most disabling and defining symptoms of Long COVID is fatigue, which is present in over 50% of cases. A subset of Long COVID patients may experience post-exertional malaise (PEM), which is a pathological condition that may share mechanisms with other post-viral syndromes such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).3 PEM is a distinguishing feature of Long COVID in which physical or cognitive exertion leads to symptom exacerbation, often lasting days orweeks?
December 10, 2025 at 4:37 AM
rippermd41.bsky.social
I really appreciate Davenport et al pushing back.

They’re responding to a proposed protocol that will purposefully mislead #LongCovid patients about the aims of the study👇

Source: bmjopen.bmj.com/content/15/1...

#MECFS #PEM
1/
Screenshot from linked protocol reads: Trial design We will conduct a single-centre, randomised two-arm modified Zelen 13 feasibility trial. We will use a 1:1 randomisation ratio, in which patients will be randomly assigned to receive either the COVIDEx intervention or usual care. We chose a modified Zelen design to enhance participation and minimise disappointment effects and biases (ie, contamination bias). 14-16 Participants will be informed that they are participating in an observational study following the natural progression of Long COVID and costs associated with standard treatments. At the end of their study participation, participants will be debriefed about the trial design and asked to provide consent for the use of their data.
December 10, 2025 at 4:37 AM
rippermd41.bsky.social
🙃

#MECFS
Gray cat with black stripes lying on a soft beanbag licking its paws. Underneath the cat is the text “Living life.” Above and to the right there’s a blurry orange and white cat leaping off the kitchen counter to pounce on the gray cat. Underneath is the text “Myalgic Encephalomyelitis (ME).”
December 9, 2025 at 5:14 AM
rippermd41.bsky.social
I did learn CrunchME has a database of trials with the biopsychosocial (BPS) researchers filtered out.

Link to site mentioned in screenshot:
crunchme.notion.site/clinical-tri...

Source for screenshot: x.com/wecrunchme/s...
Screenshot of tweet from CrunchME @wecrunchme CrunchME has a database of clinical trials with any BPS nonsense stripped out - and if we've missed something, if you flag we will review and remove if appropriate: crunchme.notion.site/clinical-trials We will also be considering a 'near me' feature with location search on our site Image of a gradient from black to white with the text The Evidence & Insight Base To Crunch IACCs Clinical Treatment Trials | Notion From crunchme.notion.site 7:21 AM • Dec 7, 2025 • 560 Views
December 8, 2025 at 6:39 PM
rippermd41.bsky.social
I just emailed them.

Their response was so frustrating.

We really need a patient union.

Their unwillingness to remove one study from a researcher with a known history of harming us 🤦🏻‍♀️

Full response: www.makevisible.com/blog/a-note-...
Screenshot from Visible’s Dec 6, 2025 message on their clinical trials feature reads: Selective removal or inclusion of studies would mean replacing the judgment of the independent review boards responsible for participant safety with our own. If we start removing individual trials, we open the door to decisions that could become subjective or unevenly applied, and it would place us in a role that belongs with established ethics review bodies. That isn't a role we can or should step into.
December 6, 2025 at 10:16 PM
rippermd41.bsky.social
Link to Mark Bonnar’s original post and video on Twitter: x.com/mark_bonnar/...
December 4, 2025 at 4:51 PM
rippermd41.bsky.social
It seems so silly but it’s really uplifting to see a celebrity fundraise and advocate for #MECFS

Mark Bonnar posted this 2 days ago.

He’s still fundraising for @actionforme.bsky.social as part of the Big Give Christmas Challenge.

I’ll link the video below
Screenshot of tweet from Mark Bonnar @mark_bonnar Please donate between the 2nd and the 9th of December and your donation will be doubled!! Give what you can to help people with ME and Long Covid. Thank you #BigGive #ChristmasChallenge #MECFS #MyalgicEncephalomyelitis 12:40 PM • Dec 2, 2025 • 9,958 Views Includes thumbnail image of a video 1:08 long of Mark Bonnar sitting on a pink couch talking about ME. Full video in next post.
December 4, 2025 at 4:51 PM
rippermd41.bsky.social
This is a very unsurprising word cloud 😂

What can I say? I spend a lot of time lying in the dark thinking about myalgic encephalomyelitis
aka #MECFS
Screenshot of a wordcloud made out of white text on a black background. Most used words: others infection, alttext, called, condition, baseline autism, care, cognitive, mask article school, postexertional autistic link makes pain dysautonomia stop myself pacing decline tried likely head teen malaise medical keep friends gets fatigue symptoms sleep less doctors during risk believe husband mcas hard started exertion chronic conditions illness books mecfs (larger font, bolded as most used) those find patient kids longcovid avoid bedbound call drop crash help health wish patients docs covid doctor rest energy severe criteria emotional research community least talk mins exercise wonder below face symptom tell hope push researchers common body syndrome favorite ridiculous feedback hypermobility, brain, trigger, family, easier, dark, experience, without, wrong
December 3, 2025 at 2:51 AM
rippermd41.bsky.social
Davenport explained the difference between PESE and PEM further under his original post.

He’s said in the past he also prefers PENE, but uses PEM since it’s what everyone knows
Screenshot of tweet from Todd Davenport @sunsopeningband PESE = symptoms worsen with exertion, says nothing about latency between onset and stressor nor recovery period PEM = delayed symptoms after stressor, prolonged recovery PEM is an energy problem. Signs/symptoms also may coincide with dysfunction in a number of other systems. 3:14 PM • Nov 26, 2025 • 4,060 Views
November 30, 2025 at 12:12 AM
rippermd41.bsky.social
Here’s how the ICC defines post-exertional neuroimmune exhaustion (PENE) aka PEM

Source: me-pedia.org/wiki/Interna...

#MECFS
Screenshot of ICC criteria from MEpedia reads: Postexertional neuroimmune exhaustion (PENE pen'-e): Compulsory This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows: 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Postexertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms. Screenshot of ICC criteria from MEpedia reads: 3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer. 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. Operational notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient's premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden) or very severe (totally bedridden and need help with basic functions). Screenshot of ICC criteria from MEpedia: There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient's recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day - if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.
November 30, 2025 at 12:07 AM
rippermd41.bsky.social
Best compliment? Winning this award.

“Dr. Zaslow was described by his son as "a compassionate healer, an astute diagnostician, and a practical therapist of body and soul. His devotion to his patients embodied Frances Weld Peabody's secret that the care of the patient is caring for the patient."
Screenshot of text reads: JOHN AND SOPHIA ZASLOW PRIZE The result of the generosity of Stephen L. Zaslow, MD, MED '58, and his wife Francine L. Zaslow, this annual prize is awarded to the graduating student who best exemplifies the qualities of spirit, mind, and heart shown by John Zaslow, MD, (his father) during fifty years of general practice in Brooklyn, New York. Dr. Zaslow was described by his son as "a compassionate healer, an astute diagnostician, and a practical therapist of body and soul. His devotion to his patients embodied Frances Weld Peabody's secret that the care of the patient is caring for the patient." His mother, Mrs. Sophia Zaslow, was a lifelong companion at home and at the office where she was receptionist, secretary, bookkeeper and more. The recipient is selected by a committee composed of the clinical department chairs.
November 27, 2025 at 2:42 PM
rippermd41.bsky.social
One thing our family learned with #MECFS is if there’s a holiday you enjoy, start it early.

Our energy is limited, but occasionally we can give ourselves more time.

If you zoom into the bottom you’ll see a hand painted portrait of Sarah Josepha Hall, founder of the national Thanksgiving holiday.
Color photograph of a Christmas tree with white lights. The tree is in a dim room so it looks like it’s glowing. Ornaments are varied and include Star Wars, Hello Kitty, Daffy Duck, Totoro, handmade ornaments and ornaments painted with historical scenes. The walls are a pale yellow and two Huck Gee turtle monk prints are visible behind the tree. The entertainment center at the edge is full of board games.
November 27, 2025 at 6:22 AM
rippermd41.bsky.social
If anyone wants an update, he responded with a clarification.

First post is the original that upset a lot of people with ME.

Next 3 posts were added today.

I’ll link what he was responding to in the next post.
Screenshot from X. Replies by Rob Wust @RobWust • Nov 22 Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke Next reply Rob Wüst @RobWust • 1h 1/n. I want to clarify my earlier comment. I was annoyed that the patient statement about the questionnaire was not accurate and I was not involved in this patient participation step, which contributed to confusion. I'm sorry for the distress this caused... Screenshot of replies on X from Rob Wüst @RobWust • 1h g... 2/n Some information shared publicly about the questionnaire and our collaboration was not accurate. There is no formal partnership or contractual agreement about publication. The posted questionnaire is also not a final tool, it is a standard step in the validation process. Rob Wüst @RobWust •1h 3/n. We obviously won't stop our research into PEM in long covid and ME after this. My goal is to be transparent about the research so misunderstandings like this don't arise again. I remain committed to rigorous methodology, clear communication, and constructive dialogue. Rob
November 24, 2025 at 9:39 PM
rippermd41.bsky.social
KH I don’t want to discourage you from giving feedback (it’s needed). But so you know what you’re walking into this is how he responded to criticism on X 😬

I’m still in shock that he hasn’t deleted it.

This is the post he was responding to:

x.com/oeg_mecfs/st...
Screenshot of post from X by Rob Wüst @RobWust Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke 11:16 AM • Nov 22, 2025 • 1,843 Views
November 23, 2025 at 8:06 PM
rippermd41.bsky.social
Agreed, his work on muscles was really good.

I hope it was just a temporary overreaction, but it’s still ridiculous to pull this stunt.
Screenshot of Tweet from Rob Wüst @RobWust Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke 11:16 AM • Nov 22, 2025 • 1,843
November 23, 2025 at 3:45 AM
rippermd41.bsky.social
I have inadvertently landed on the non-binary lesbian haircut per my non-binary teen and their LGBTQ+ group chat.

Post shower it’s okay for a day or two, but because I have wavy hair it eventually stands straight up like bride of frankenstein 😂
Selfie of a 40 year old white woman. Her hair is shorn on the sides with the 4 inches on top standing straight up. Her hair is brown with a prominent gray streak in the front. She’s standing in a bathroom with dark gray tile and a gray towel visible behind her.
November 20, 2025 at 3:45 AM
rippermd41.bsky.social
Your last saved meme is your moral philosophy
A green goblin face peeks out from a shadowed tunnel. Tree roots and greenery cover the roof of the tunnel. Text reads This is who you’re trying to make socialize. Watermark reads @lidapavlova
November 17, 2025 at 8:31 AM
rippermd41.bsky.social
He’s the the most active dachshund we ever owned.

We play fetch 2-3 hours a day.

Walks only energize him more.

Of course he had to bond with the person with #MECFS 🤦🏻‍♀️

Ollie on the other hand sleeps all day.
Color photo of chocolate and cream dachshund with his hind legs on a couch and his front paws on the window sill looking out. He looks alert with his ears perked up. Half the window behind him is painted with shapes of various colors and looks like stained glass. Color photo of 2 chocolate and cream dachshunds lying out on the lawn in the sun. In the from is Ollie looking to the left. Behind him is Finn who is looking off to the right.
November 16, 2025 at 8:17 AM
rippermd41.bsky.social
Finn came to us from the rescue with this game. He takes a toy, covers it with the blanket to chew on it and then like a plush toy he destroys it.

We supervise to avoid harm, but no matter how many toys we get he goes back to this.

Here’s Finn with one of our frogs.
Color photo of Finn, a chocolate and cream dachshund, standing up on his hind legs to look at a white’s tree frog in a travel terrarium. The frog and dog are staring at each other. The terrarium sits on a blue and black rollator and has a red and green plant inside.
November 16, 2025 at 8:17 AM
rippermd41.bsky.social
I needed a laugh today then my husband sent this text.

For context Finn is a sweet, slightly derpy dachshund with a penchant for destroying blankets.

The blankets end up looking like swiss cheese.

Hence his ability to get his head stuck in one.
Screenshot of text reads: Today 7:30 pm Your dog got his head stuck in a blanket again Color photo of a chocolate and cream dachshund holding a white ball with his tongue hanging out. He’s wearing a teal collar with a name tag that says Finn. He sits on a gray pillow with someone in a gray sweatshirt in the background.
November 16, 2025 at 8:17 AM
rippermd41.bsky.social
Hold up, is it just my brain fog or does the “sequential manner” mean they’re increasing fluid and salt intake separately?
Screenshot from link. Highlighted text reads: The interventions will be tested in a sequential manner for each patient to estimate which intervention has the best effect (accepting the fact that there will be a summative effect of interventions). Rest of text above highlighted area: Design: Exploratory prospective study to develop and test a DMP comprising of a) increased fluid intake b) increased salt intake c) regulate food amount and type and d) optimise physical/ cognitive/ emotional exertion to avoid crashes, e) calf muscle function and e) pharmacological agents in select cases of Postural Tachycardia Syndrome (PoTS) and Orthostatic Hypotension (OH).
November 15, 2025 at 12:15 AM